Instant download Reproductive ethics new challenges and conversations 1st edition lisa campo-engelst
Visit to download the full and correct content document: https://textbookfull.com/product/reproductive-ethics-new-challenges-and-conversation s-1st-edition-lisa-campo-engelstein/
More products digital (pdf, epub, mobi) instant download maybe you interests ...
Comfort Measures Only New and Selected Poems 1994 2016
This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made.
Printed on acid-free paper
This Springer imprint is published by Springer Nature
The registered company is Springer International Publishing AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
Reproductive Ethics: New Challenges and Conversations Introduction .... 1
Lisa Campo-Engelstein and Paul Burcher
Part I Genetic Testing and Enhancement
Zooming Out: Solidarity in the Moral Imagination of Genetic Counseling 7
Jazmine Gabriel
Enhancing Future Children: How It Might Happen, Whether It Should
Susan B. Levin
The Decision to Know: Pregnancy and Epistemic Harm
Kirsten M. Kringle-Baer
Part II Fertility Preservation
Egg Freezing and the Feminist Quest for Equality in the Workplace
Karey Harwood
Fertility Preservation in Transgender and Gender-Nonconforming Youth and Adolescents
Steph deNormand
Part III Childbirth
Rights and Realities in U.S. Maternity Care
Hermine Hayes-Klein
The Periviable Cesarean Section: Can a Case Be Made for Expanding Beneficence in Decision-Making? .........................................
Tara A. Lynch and Paul Burcher
Part
IV Abortion, Surrogacy, and Circumcision
“Teaching Morality by Teaching Science:” Religiosity and Abortion Regret ........................................................................................
Alesha Doan and J. Shoshanna Ehrlich
My Child, Your Womb, Our Contract: The Failure of Contract Law to Protect Parties in Gestational Surrogacy ..................................................
Claire Horner
Vulvar Nick and Metzitzah b’peh: Punishment or Harm Reduction? ......
Allan J. Jacobs and Kavita Shah Arora
About the Contributors
Kavita Shah Arora received a B.S. from the Pennsylvania State University, an M.D. from Jefferson Medical College, and a Master’s in Bioethics from the University of Pennsylvania. She is Board certified in Obstetrics and Gynecology. She serves as the Director of Quality for the Department of Obstetrics and Gynecology at MetroHealth Medical Center and an Assistant Professor of Reproductive Biology and Bioethics at Case Western Reserve University. Department of Obstetrics and Gynecology, MetroHealth Medical Center, Case Western Reserve University, Cleveland, OH, USA
Paul Burcher is an Associate Professor of Bioethics and Obstetrics and Gynecology at Albany Medical College. He is the Program Director for the residency in Obstetrics and Gynecology, and the Associate Director of the Alden March Bioethics Institute. He is a practicing generalist obstetrician/gynecologist with over 21 years in practice in both private and academic settings. Since 2011 he has worked in a joint appointment between the departments of Obstetrics and Gynecology and Bioethics at Albany Medical College. His publications have been on the doctorpatient relationship, physician empathy, and more recently on ethical issues in clinical obstetrics, including cesarean delivery on maternal request (CDMR), birth plans, and home birth. He is currently involved in a research project studying cesarean section regret.
Alden March Bioethics Institute, Department of Obstetrics and Gynecology, Albany Medical College, Albany, NY, USA
Lisa Campo-Engelstein is an Associate Professor at the Alden March Bioethics Institute and Department of Obstetrics and Gynecology at Albany Medical College in Albany, New York. She earned a Ph.D. from Michigan State University in philosophy with a focus in bioethics and feminist theory. She completed a postdoctoral fellowship with the Oncofertility Consortium at Northwestern University Feinberg
School of Medicine. Her main research area is reproductive ethics, especially contraception, childbirth, fertility preservation, and assisted reproductive technologies.
Alden March Bioethics Institute, Department of Obstetrics and Gynecology, Albany Medical College, Albany, NY, USA
Steph deNormand graduated from St. Lawrence University with a B.S. in Biology and is expected to complete an M.A. in Women’s, Gender, and Sexuality Studies from University at Albany in May 2017. During their time at the University at Albany they are the acting Coordinator of the WGS Teaching Collective, teaching feminist pedagogy and overseeing the instruction of Introduction to Feminisms. Their main academic, advocacy, and activism concentration focuses on gender identity and expression, trans identities, and LGBTQ and diversity education.
Women’s, Gender, and Sexuality Studies Department, University at Albany, Albany, NY, USA
Alesha Doan is an Associate Professor in the School of Public Affairs and Administration and the Political Science Department at the University of Kansas. Professor Doan’s interdisciplinary research is guided by her broader interests in public policy, organizations, and gender/social equity. Her publications include articles in a variety of journals as well as two books, Opposition and Intimidation: The Abortion Wars and Strategies of Political Harassment (University of Michigan Press, 2007) and The Politics of Virginity: Abstinence in Sex Education (Praeger, 2008). Professor Doan is currently working on a book, For Their Own Protection: Abortion Regret and the Attack on Women’s Reproductive Freedom, with Professor Shoshanna Ehrlich. She is the lead researcher on a 3-year grant (2016–2019) from the Department of Health and Human Services, Office on Women’s Health, to develop and implement policies and prevention programs addressing the issue of sexual assault on college campuses.
School of Public Affairs and Administration and Political Science, University of Kansas, Lawrence, KS, USA
J. Shoshanna Ehrlich is a Professor in the Women’s and Gender Studies Department at the University of Massachusetts Boston. Her scholarship focuses on the sexual and reproductive rights of young women and abortion law. Legal in its focus, her work is also highly interdisciplinary in its commitment to situating the law in an historical and social context. In addition to the publication of many law review articles, her books include Who Decides? The Abortion Rights of Minors (Praeger, 2006) and Regulating Desire: From the Virtuous Maiden to the Purity Princess (SUNY, 2014), as well as a family law textbook. Professor Ehrlich is currently working on a book, For Their Own Protection: Abortion Regret and the Attack on Women’s Reproductive Freedom, with Professor Alesha Doan. She also works with a variety of advocacy organizations committed to securing the reproductive and sexual rights of young women.
Women’s and Gender Studies, University of Massachusetts Boston, Boston, MA, USA
Jazmine Gabriel is a practicing genetic counselor, currently specializing in cancer genetics. She is also an Assistant Professor of Bioethics at Albany Medical College’s Alden March Bioethics Institute. She earned a Ph.D. in philosophy from the University of Oregon and an M.S. in genetic counseling from Boston University. Her current research interests include home birth midwives’ perceptions of and experiences with genetic testing and genetic counselors, genetic counselors’ perspectives on interpreting direct-to-consumer genetic testing, conflict of interest in genetic counseling, and the concept of information in direct-to-consumer genetic testing.
Genetic Counseling Program, Boston University School of Medicine, Boston, MA, USA
Karey A. Harwood is an Associate Professor of Religious Studies in the Department of Philosophy and Religious Studies at North Carolina State University. She is also the Coordinator of NC State’s Women’s and Gender Studies program. She received her Ph.D. from the Graduate Division of Religion at Emory University where she studied religious ethics and the sociology of religion and morality and was awarded a Woodrow Wilson Dissertation Grant in Women’s Health. The focus of her research has been in biomedical ethics and reproductive technologies. Her book, The Infertility Treadmill: Feminist Ethics, Personal Choice, and the Use of Reproductive Technologies (UNC Press), examines both the social context of reproductive technologies and the individual experience of infertility, including the tendency of reproductive technologies to function as a consumeristic rite of passage in coming to terms with infertility. Her recent work has focused on egg freezing.
Department of Philosophy and Religious Studies, North Carolina State University, Raleigh, NC, USA
Hermine Hayes-Klein is a lawyer and the Founder of Human Rights in Childbirth, an international nonprofit that connects grassroots activists with legal advocacy to advance women’s rights in maternity care. Hermine received her B.A. and J.D. degrees from the University of Chicago. She spent 6 years practicing family law, LGBT rights advocacy, and art law in New York and Connecticut before moving to the Netherlands, where her children were born at home with a Dutch midwife in 2007 and 2010. Hermine taught international law at the Hague University from 2008 to 2012, where she was also Director of the Bynkershoek Institute Research Center for Reproductive Rights. Hermine lives in Portland, Oregon, with her family.
Law Offices of Hermine Hayes-Klein, LLC, Portland, OR, USA
Human Rights in Childbirth, The Hague, The Netherlands
Claire Horner is a Clinical Ethics Fellow at the Alden March Bioethics Institute at Albany Medical College. She earned a J.D. and M.A. in Bioethics from the University of Pittsburgh, and prior to that earned a B.A. in Philosophy and Theology
from Franciscan University of Steubenville. She has experience speaking both regionally and internationally on issues in bioethics, including legal and ethical issues in foregoing life-sustaining treatment, informed consent, and reproductive technologies. Her research is currently focused on reproductive ethics and law, particularly issues in embryo donation and gestational surrogacy.
Alden March Bioethics Institute, Albany Medical College, Albany, NY, USA
Allan J. Jacobs received a B.A. in Psychology from Cornell University, an M.D. from the University of Southern California, and a J.D. from St. John’s University. He is Board certified in Obstetrics and Gynecology and in Gynecologic Oncology. He has served as Chair and Residency Program Director at two large hospitals in New York City. He currently is Director of Gynecologic Oncology at Coney Island Hospital, Brooklyn, New York, Professor of Obstetrics and Gynecology and Associate Faculty in Bioethics, Stony Brook University, Stony Brook, New York, and Adjunct Professor at New York Medical College.
Gynecologic Oncology, Coney Island Hospital, Brooklyn, NY, USA
Department of Obstetrics and Gynecology, Coney Island Hospital, Brooklyn, NY, USA
Department of Obstetrics and Gynecology, Stony Brook University, Stony Brook, NY, USA
Kirsten M. Kringle-Baer received her Ph.D. in philosophy from the University of Minnesota with a dissertation on epistemic reasons for not always pursuing knowledge. She is particularly interested in situations that arise in the context of seeking or providing health care and in the ethics and epistemology of nursing practice. She has taught at the University of Minnesota, the University of Saint Catherine, and the Kansas City University of Medicine and Biosciences.
Cincinnati, OH, USA
Susan B. Levin is Roe/Straut Professor in the Humanities and a Professor of Philosophy at Smith College. The focus of her research is Greek philosophy and bioethics, which she is keen to bring together. Her publications in Greek philosophy include two books and numerous articles. In the final chapter of Plato’s Rivalry with Medicine: A Struggle and Its Dissolution (Oxford, 2014), Levin argues that drawing on Plato, particularly the Laws, can enrich current bioethical discussions of the doctor-patient tie, medical professionalism, and medicine’s relationship to society. Levin’s current work focuses on bioethical controversy regarding enhancement. In her explorations of the debate over vigorous enhancement as framed and pursued thus far, she often finds it illuminating to draw on Greek philosophy, especially Plato and Aristotle. In addition to publishing articles on enhancement, Levin is currently writing a book on the topic.
Department of Philosophy, Smith College, Northampton, MA, USA
Tara A. Lynch is currently a first year fellow in Maternal Fetal Medicine at the University of Rochester Medical Center. She completed her undergraduate degree in biochemistry at Siena College. She then attended medical school at Albany Medical College and remained at Albany Medical Center for her residency in Obstetrics and Gynecology. She currently involved in research on preterm birth specifically pertaining to periviability and placental infections.
Department of Obstetrics & Gynecology, University of Rochester Medical Center, Rochester, NY, USA
Reproductive Ethics: New Challenges and Conversations Introduction
Lisa Campo-Engelstein and Paul Burcher
When we first envisioned organizing a conference solely on issues in reproductive ethics we were met by some skepticism by friends and colleagues. Were there really enough compelling topics and scholarship in this area to sustain interest for a 2-day conference? Our view, and the perspective confirmed by this book, is that reproductive ethics is a field that has many questions, which we have only started to explore to the extent that they deserve. There are two reasons this is true. One is that some “hot button” issues have received all the attention—abortion, in particular, comes to mind here. The other is that unlike many well-litigated areas of bioethics, such as end-of-life care, emerging technologies in reproductive ethics are changing the ethical playing field faster than the bioethics literature can keep pace. As for whether reproductive ethics can sustain interest we can only note that it is hard to imagine a subject that humans spend more time and energy upon than sex and reproduction. It is the only area of bioethics that can be called sexy without invoking an implausible metaphor.
We have organized this book into sections that share a common theme, and the first theme explored is “Prenatal Genetic Testing and Enhancement.” A philosopher who is also currently training to be a genetic counselor wrote the first chapter. Jazmine Gabriel addresses the tension between maternal autonomy and the disability community, and the way that prenatal genetic counselors seek to navigate this tension without disrespecting either side. Her perspective is that the non-directive counseling techniques taught to genetic counselors do not escape the critique of disability advocates because women and couples are still expected to decide whether to continue a pregnancy based upon genetic testing that reveals only one
L. Campo-Engelstein (*) • P. Burcher
Alden March Bioethics Institute, Department of Obstetrics and Gynecology, Albany Medical College, Albany, NY, USA
L. Campo-Engelstein, P. Burcher (eds.), Reproductive Ethics, DOI 10.1007/978-3-319-52630-0_1
L. Campo-Engelstein and P. Burcher
aspect of the fetus—a metonymy of sorts where a part comes to stand for the whole. While some aspects of this dilemma between individual choice and respect for the disability community may seem insoluble, she suggests that the lens of solidarity points to new perspectives that may lessen the tension between these two apparently opposing values.
Susan Levin’s chapter, “Enhancing Future Children: How it Might Happen, Whether it Should,” addresses proponents of “Procreative Beneficence” and uses Aristotelian philosophy to critique its privileging of cognitive ability over a more balanced notion of human faculties. She argues that human flourishing cannot be enhanced solely by boosting human rationality, and that Aristotle recognized that human “thought and character” represent a “harmony between … (the) … rational and non-rational.” Reading this chapter we are reminded that reaching back 2500 years one can still find philosophical descriptions of our humanity that have relevance to current debates regarding emerging genetic technologies.
The final chapter in this section, “The Decision to Know: Pregnancy and Epistemic Harm” by Kirsten M. Kringle-Baer, examines the epistemic harms of knowledge that can be garnered through prenatal ultrasound, screening, and testing during pregnancy. The author recounts her pregnancy that was misidentified as high risk, which resulted not only in unnecessary medical interventions and increased stress and anxiety, but also in epistemic harms. In analyzing her pregnancy narrative, Kringle-Baer highlights how the circumstances of both the subject and the object of knowledge can affect whether pursuing knowledge is advisable.
The next section, “Fertility Preservation,” focuses on the rapidly emerging and expanding field of fertility preservation. Fertility preservation of an individual’s gametes first rose to prominence in the oncology context. Cancer patients of reproductive age were interested in freezing their gametes so they could genetically reproduce later in life; the field of oncofertility was born. Today fertility preservation has expanded beyond cancer patients to include a wide variety of individuals. In this section, the authors focus on fertility preservation for transgender and gender nonconforming individuals and for single women seeking to delay childbearing.
Nonmedical egg freezing has received much attention in the media. In the chapter, “Egg Freezing and the Feminist Quest for Equality in the Workplace,” Karey Harwood explores the related topics of nonmedical egg freezing, women’s employment, and delayed childbearing. One of the common arguments in favor of nonmedical egg freezing is that it functions as a form of “reproductive affirmative action,” allowing women time to focus on their education and careers and still have children using their own eggs. Harwood rejects this argument because its narrative of planning and control does not hold up, especially in light of the health risks associated with egg freezing and its relatively low probability of success. Rather than addressing the larger social issues at play, nonmedical egg shifts the burden onto individual women, which may prevent broader structural changes from occurring in the workplace that could actually engender long-lasting justice.
In the chapter, “Fertility Preservation in Transgender and Gender Nonconforming Youth and Adolescents,” Steph deNormand examines the topic of fertility preservation for transgender and gender nonconforming youth and adolescents, a topic that
has not received much attention in the reproductive ethics literature. Gender affirming treatments for individuals with gender dysphoria, such as hormonal treatment and surgery, can diminish and even eliminate fertility. Fertility preservation may be an option before beginning gender affirming treatments. However, it raises some ethical issues, especially because these individuals are minors. Drawing upon queer theory, trans theory, and feminist theory, and comparing fertility preservation for transgender and nongender conforming adolescents to fertility preservation for young oncofertility patients, deNormand analyzes the ethical issues involved and makes recommendations for how to handle different types of cases.
The third section focuses on “Childbirth.” Hermine Hayes-Klein, a lawyer working in reproductive rights, makes a strong case against the system of maternity care in America, but also lays out a clear vision of how things can be improved. Her arguments are empirical and historical, and her solutions are balanced, in the sense that she recognizes that fully empowering women in their medical choices must also come with some increased responsibility for their now autonomous choices, thus potentially lessening physician liability—particularly when women make choices different than physician recommendations. Her descriptions of her own home births in the Netherlands point to a kind of holistic, even spiritual experience, that women have difficulty accessing in this country. It is hard to read her work without thinking that we can, or must, do better.
Tara Lynch, a fellow in maternal-fetal medicine, and Paul Burcher, an obstetrician/gynecologist and bioethicist (and co-editor of this book) write on the ethical challenges of periviable birth—births in the range of extreme prematurity. The question they address is whether a cesarean section can be justified by maternal decision-making that is not grounded in medical beneficence, but rather in an expanded sense of beneficence that includes psychosocial, cultural, and other factors. The example discussed is whether it is reasonable to perform an elective cesarean section if it allows the birth of a living baby, even if the death of the child from prematurity is ultimately a certainty. Arguing from other analogous cases, they conclude that an expanded notion of beneficence can justify some elective cesarean sections in the periviable period.
The field of reproductive ethics includes many “hot button” issues, some of which do not fit into the previous sections. In this final section, “Abortion, Surrogacy, and Circumcision,” the authors address three important “hot button” issues. The first chapter in this section, “‘Teaching Morality by Teaching Science:’ Religiosity and Abortion Regret” by Alesha Doan and J. Shoshanna Ehrlich, deals with the longstanding controversial topic of abortion. Specifically, the authors focus on how the concept of abortion regret is being used to limit access to abortion including the 2007 Carhart v. Gonzales decision, in which United States Supreme Court drew upon abortion regret to support upholding the federal ban on late-term abortions. After examining 180 affidavits from women who experienced abortion regret as well as interviewing 25 antiabortion activists, the authors conclude that the concept of abortion regret exists as intertwined with and inherently a part of these women’s religious beliefs. While they acknowledge the importance of these women’s experiences, they assert that their religious perspectives should not be treated as universal for all women and that abortion regret should not be upheld as a legitimate empirical claim.
L. Campo-Engelstein and P. Burcher
The second chapter in this section, “My Child, Your Womb, Our Contract: The Failure of Contract Law to Protect Parties in Gestational Surrogacy” by Claire Horner, tackles another contentious topic, commercial gestational surrogacy. In the United States, contract law is used for commercial surrogacy. Yet, as Horner points out, contract law is poorly suited for reproductive arrangements like surrogacy: Important components of surrogacy contracts are unenforceable, the standard of performance is not clear, and damages for a breach of contract are inadequate. Moreover, contract law may complicate the clinical management of a surrogacy pregnancy and may fail to honor the reproductive autonomy of all the individuals involved. Due to these shortcomings, she concludes that contract law is not a suitable framework for governing commercial surrogacy arrangements.
The third chapter in this section, “Vulvar Nick and Metzitzah B’Peh: Punishment or Harm Reduction?” by Allan J. Jacobs and Kavita Shah Arora, addresses the hotly debated topic of genital alteration of infants. They compare two types of genital alteration—vulvar nick and metzitzah b’peh (direct oral suction of blood from the penile head that is used in some Jewish ritual circumcisions)—and conclude that while neither may be ethically justifiable, a punitive criminal approach to them is not defensible from both a utilitarian perspective and a retributive justice perspective. Instead, they assert a harm reduction approach as the best way to respond to vulvar nick and metzitzah b’peh.
We believe that the chapters offered in this compilation represent a fair representation of the breadth and depth of discussions within the field of reproductive ethics, yet we also recognize that there are still many questions and controversies not addressed here. There is work to be done, and the accelerating technologies of reproduction and genetics make this task both urgent and exciting.
Part I
Genetic Testing and Enhancement
Zooming Out: Solidarity in the Moral Imagination of Genetic Counseling
Jazmine Gabriel
Introduction
Prenatal genetic testing allows potential parents to screen for and diagnose an everincreasing number of conditions. However, because there is no treatment for the majority of currently detectable conditions, the information opens the door to selective termination, which some in the disability community consider morally problematic. Genetic counselors, and the other genetics professionals who offer these tests, have a professional obligation to help each client1 navigate the implications of genetic information and to make a decision, which, while legally considered a personal and private decision, inevitably spills over into the political realm.
In this paper, I begin by giving an overview of the nature of the tension between the disability community and the genetic counseling profession. However, my goal is not to side with one group or the other. Instead, I would like take a step back and consider the lens through which the tension between the two communities has been viewed, namely, in terms of the principle of autonomy. While I do not intend to question the importance of reproductive freedom, I would like to ask whether the language of choice and freedom fully captures what is going on here. In brief, I argue that the principle of autonomy as the primary framework for understanding both the problem and potential responses to the problem, is insufficient, and that looking to the relational underpinnings of autonomy may shed greater light on
1 Historically, genetic counselors have used the term “client” rather than “patient” because the psychosocial aspects of the profession derive from Rogerian client-centered therapy and because many founding figures in the profession were Ph.D.s rather than M.D.s, and wanted to make clear that they did not claim to be treating sick patients. Today, genetic counselors tend to use the terms interchangeably. I use the term “client” out of respect for the original intention.
J. Gabriel (*)
Genetic Counseling Program, Boston University School of Medicine, Boston, MA, USA
L. Campo-Engelstein, P. Burcher (eds.), Reproductive Ethics, DOI 10.1007/978-3-319-52630-0_2
J. Gabriel
previous responses and future possibilities. Shifting the theoretical lens will not resolve the tension between the two communities; but perhaps looking at the problem from different angles will broaden our ability to imagine currently unforeseen alternatives.
In particular, and following the 2015 article by Bruce Jennings and Angus Dawson entitled “Solidarity and the Moral Imagination of Bioethics,” my aim is to consider if or how the concept of solidarity2 might enrich thinking about the tension between the genetic counseling profession and the disability community. I consider the role of the concept of solidarity in terms of what the authors refer to as the “calculus of consent” and the “moral imagination,” which I will interpret broadly as tools for understanding the past and imagining the future.
Why solidarity? Jennings and Dawson note that “[i]n contemporary neoliberal societies … ideological currents are promoting a calculus of consent based on interests that separate rather than interests that join” (2015: 32). In controversies where consensus is elusive, where both sides have a legitimate concern, perhaps it is worthwhile to zoom out, rather than remain mired in a yes or no tug of war, and to shift from an exclusive focus on interests that separate to a broader view that contextualizes individual interests and makes apparent the conditions for their possibility.
Certainly state programs in recent history could dissuade anyone from using the language of solidarity; however, promoting the interests of groups over the rights of individuals is not my intention. The aspects of the concept of solidarity that interest me here are the following: Solidarity as the structural context of individual freedom and solidarity as rooted in historical memory. Both aspects situate individuals within a complex network of relationships to other human beings, including those who lived long ago and those who will live in the future. Jennings and Dawson refer to solidarity as a “shaping sensibility” that “informs other normative principles and ideals rather than supplementing or competing with them, a perspective that gives a relational3 interpretation to regulative ethical principles such as justice, liberty, and beneficence” (2015: 32). Because reproductive freedom is at the heart of debates about the limits of prenatal genetic testing, it is particularly important to view the concept of solidarity as shaping the analysis rather than replacing the principle of autonomy.
2 See Prainsack and Buyx 2012 for an in depth analysis of the uses of the term solidarity in bioethics literature.
3 There is an enormous body of literature on ethical theories that critique excessive individualism and prioritize relationships. See, for instance, the ethics of care developed by Carol Gilligan (1982) and Nel Noddings (1984). Many contemporary analyses by phenomenologists, feminists, postmodernists, social-justice theorists, cultural theorists, etc., start from the notion that individual relationships constitute or are prior to the individual. See, for instance, Mackenzie and Stolijar (2000), “Relational Autonomy: Feminist Perspectives of Autonomy, Agency, and the Social Self.” See also Kenny et al. (2010) for a summary of the inadequacies of the dominant individualistic approach and a discussion of relational autonomy, relational social justice, and relational solidarity in the context of public health.
The Disability Critique of Prenatal Genetic Testing
The disability4 critique of prenatal testing centers around two primary claims: “that prenatal genetic testing following by selective abortion is morally problematic, and that it is driven by misinformation” (Parens and Asch 2000: 13). Screening for Down syndrome has been around the longest and exemplifies some of the thornier aspects of the critique. When a pregnant woman is offered diagnostic testing (amniocentesis or chorionic villus sampling), she may use this information to prepare for a child with Down syndrome, but she may also use the information to decide whether or not to pursue termination. Although genetic counselors would like to view themselves as offering the neutral facts, many people feel that the implication in offering the test is that it may be preferable to avoid having a child with this condition (Saxton 2000; Patterson and Satz 2002). Some families who have children with Down syndrome, and some individuals with Down syndrome, feel that testing communicates5 a fundamental disrespect for the lives of individuals with Down syndrome (Bauer 2005).
Adrienne Asch has characterized the moral wrong of selective abortion as reducing a whole person to a single trait: As in other forms of discrimination when a person is reduced to her sex, color, or sexual orientation, selective abortion communicates that one quality is sufficient to render one person’s life less valuable than other lives (Asch 2000). As Martha Saxton (1998) puts it, the message is that “some of us are ‘too flawed’ in our very DNA to exist” (391). The objection here, called the expressivist objection, is that prenatal genetic testing sends a message that it is better not to exist at all than to exist with a disability. Asch argues that the moral wrong lies not in the
4 I follow Adrienne Asch in using the term to include “all health-related departures from speciestypical functioning” (Asch 2003: 319, Note 10). See also the definition of disability in the Americans with Disability Act of 1990. While I will use broad terms such as disability community and disability movement, I am aware that groups “are not unified monoliths,” as Joseph Stramondo puts it prior to clarifying his intention to use the term “disability movement.” He writes, “This term is deliberately broad and meant to encompass the substantial range of sometimes divergent tactics and ideologies deployed by disabled people, but it is not assumed that all disabled people engage in such action, have the same political beliefs, or use identical advocacy approaches. In addition, while the lived reality of disability is an important feature of my argument, the ‘disability movement’ is not simple shorthand for people who experience life with an anomalous embodiment or medical impairment but instead refers to a particular subset of disabled people who are conscious of their own subordinate social position and engage in political action accordingly” (Stramondo 2016).
5 The claim that there is a “message” communicated in the offering of or existence of prenatal genetic tests is best understood in the context of the contrast between the medical and social models of disability. If much of the reason why people with disabilities are un-able is rooted in the lack of societal accommodation, then offering prenatal testing conveys a message that society would rather address the challenges associated with disabilities by preventing people with disabilities from being born rather than taking measures to improve institutions and practices that could enhance the lives of people with disabilities. See Asch 2003, “Disability Equality” in Prenatal Testing. See also Susan Wendell (1996) who says selective abortion sends the message that “we do not want any more like you” (in The Rejected Body).
J. Gabriel
choice of termination itself, but in the choice to abort this particular fetus in cases where the pregnancy is otherwise desired. She calls this the any/particular distinction: To terminate because it is not the right time is to say ‘I don’t want any baby right now,’ whereas to terminate following prenatal testing, whether because of sex or genetic condition, is to say ‘I don’t want this particular baby’ (Asch 2000; Saxton 2000).
Some take the argument a step further and say that the mere existence and availability of prenatal testing constitutes a judgment of people currently living with the conditions for which there is testing (Madeo et al. 2011; Patterson and Satz 2002). In offering the test, the medical professional communicates that this is a condition whose impact is sufficiently devastating as to warrant prevention altogether. True, clients are not forced to get these tests, or terminate on the basis of results if they do pursue testing, but often the social impact of the existence of the tests is to pressure parents to do both (Munger et al. 2007; Press 2000). For instance, parents who have carried pregnancies with fetuses affected by trisomy 21 or spina bifida report being asked whether they got “the test” (Bauer 2005). Awareness that they will face this question, and that the determination of sympathy or judgment hinges on the answer, inevitably constrains the “choice” facing parents (Jennings 2000; Lippman 2003).
A further dimension to the disability critique of prenatal testing is that by reducing the number of people with genetic conditions, like Down syndrome, we may decrease the social urgency of improving disability accommodations and reducing discrimination (Wasserman and Asch 2006). This perpetuates the medical model of disability, which assumes that the problem is with the particular trait rather than with society’s unwillingness to increase accommodations for people with that trait (Saxton 2000; Kaplan 2000).
Messages Sent and Received
The disability critique of prenatal genetic testing has been challenging for the genetic counseling profession to digest because the accusation is at odds with how the profession views itself: Genetic counselors view themselves as “helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease” (Resta et al. 2006, my italics). The demographic attracted to this profession, typically white, middle-upper class women,6 frequently believe themselves to be good, tolerant individuals, who respect all choices and celebrate human diversity. The goal, as many genetic counselors see it, is to promote informed choices, not to send messages about the lesser value of certain people. What could be wrong with providing more information? And, as genetic counselor Robert Resta puts it, gently encouraging genetic counselors to laugh at themselves, “Some of our best friends are people with disabilities, right?” (Resta 2011: 1786).
6 Early genetic counselors were men, but by the 1970s most counselors were white, middle-upper class women; and, according to a 2010 survey by National Society of Genetic Counselors (NSGC) women still make up 95% of the field, with 92% identifying as white or Caucasian (Stern 2012: 25–26). See also p. 74 for a discussion of Nancy Steinberg Warren’s 2004 organized retreats on challenges to diversifying the profession.
Does prenatal genetic testing or selective abortion following testing send a “message” that disabled lives are not inherently valuable? A number of authors have raised objections to the expressivist argument. Buchanan (1996) argues that there can be no message if the person supposedly sending the message does not actually hold the belief that is the content of the message received. Lindemann Nelson (2000) disagrees, to a certain extent, and offers the example of the confederate flag: The flag may send a message in support of slavery even if the person flying the flag insists that he merely intends to honor his heritage and ancestry. But, says Lindemann Nelson, “abortions are not flags” (2000: 197). An abortion, unlike a flag, is not a symbol or a socially agreed upon way of communicating in the broader context of a language.
Regardless of the ontological status of abortion, one could argue that a message has been received. Bellamo (2009) found that 80% of study participants (377 members of advocacy organizations for Down syndrome) agreed with the statement “Prenatal diagnosis is used to decrease the population of individuals with disabilities,” and 90% agreed with the statement “Genetic counselors influence patient decisions.” Furthermore, even if counselors do not believe or intend the purpose of prenatal testing to be decreasing the population of individuals with Down syndrome, the fact remains that this is a consequence of prenatal testing Even though the chance of conceiving a baby with Down syndrome increases with the age of the mother, the number of babies born with Down syndrome has not increased in countries or populations where delayed childbearing has increased (Resta 2011; Cocchi et al. 2010; Caplan 2015; Stern 2012). However, there has been a “relative increase and re-distribution of babies with Down syndrome and other disabilities among certain ethnic and lower socio-economic status groups” (Resta 2011: 1787). Since the chance to conceive a baby with Down syndrome is equal in all populations, the breakdown of births of babies with Down syndrome according to socioeconomic and cultural lines suggests that attitudes towards and/or access to prenatal testing are responsible for this difference (Resta 2011; Cocchi et al. 2010).
Even if genetic counselors do not intend to send a message about the value of life with a disability, empirical studies about information given during genetic counseling sessions support claims by disability advocates that genetic counselors harbor a negative bias toward people with disabilities. Farrelly et al. (2012) found that genetic counselors were more likely to mention termination than pregnancy continuation and adoption. Studies also show that genetic counselors focus primarily on the biomedical aspects of genetic conditions rather than on quality of life issues for a child with a disability (Roter et al. 2006; Farrelly et al. 2012). Counselors did not, for the most part, offer information about what capabilities and skills might be present alongside limitations. In other words, genetic counselors were neither perceived to be offering, nor claiming by self-report to offer, a balance of both positive and negative dimensions of various conditions (Madeo et al. 2011). It should be acknowledged, however, that in response to these findings many genetic counseling programs and genetic counselors have made an explicit attempts to address biases and improve relations with the disability community. Interestingly, responses to the disability critique are generally couched in terms of enhancing client autonomy. It is to these responses that I now turn.
Responding to the Disability Critique
The ideal of non-directiveness7 has long dominated the genetic counseling ethos, floating intact above the ebb and flow of scholarly critiques about its possibility and desirability (Kessler 1997; Biesecker 1998; Caplan 1993; Gervais 1993; Sorenson 1993; Patterson and Satz 2002; Weil 2003; Arribas-Ayllon and Sarangi 2014; Suter 1998). For the purposes of this paper, the term can be understood in its most simplistic sense: The role of a genetic counselor is to offer her client relevant information about genetic disease and risk, and allow the woman to make her own decision without influencing, i.e. directing, her in one way or another. The assumption is that the client can make an autonomous decision only when the counselor behaves in a nondirective manner, and the counselor achieves her goal of non-directiveness if she offers neutral, scientific facts and omits opinions about what the patient ought to do. A neat distinction between facts and values sits unexamined in the background. Genetic information is assumed to be value-neutral, and so if the genetic counselor presents information and does not tell the client how to act on it, she is assumed to be leaving her values out of the discussion, including any value-judgments about the value of life with disability.
The professional motivation for adopting non-directiveness as a foundational principle for genetic counseling is usually described as a means to distance or differentiate genetic counseling from eugenics (Weil 2003; Biesecker 1998; Sorenson 1993). Resta (1997) questions this narrative by pointing out that early practitioners in “human genetics” seemed to have no qualms affirming non-directiveness in one breath and eugenic goals in the next.8 Still, it does not follow from this that the intent was not to give an appearance of a distinction between eugenics and human genetics clinics.
Alexandra Stern (2012) points out that Sheldon Reed, the man who coined the term “genetic counseling” as a “kind of genetic social work without the eugenic connotations” (Reed 1974), was well aware of the importance of distancing the new field of human genetics from eugenics. At the same time, he acknowledged that the two terms were synonyms: “As late as 1979, Reed explained in a lecture that ‘our present day use of the term ‘human genetics’ instead of ‘eugenics’ may be financially and politically expedient but there is no great philosophical distinction between them’” (Stern 2012: 20). Stern suggests that the field of genetic counseling could be considered “neo-eugenic”:
7 For a history of how non-directiveness became central to the profession of genetic counseling see Stern, Telling Genes, 2012, especially Chap. 6, where she outlines the convergence of several distinct aspects: The development of client-centered counseling by Carl Rogers; Sheldon Reed’s choice of the term client rather than patient as the subject of genetic counseling; the birth of bioethics as a discipline, along with its particular focus on client autonomy as response to past abuses (human experimentation, paternalism, etc. Interesting, the noun “non-directiveness” did not enter the literature until the 1980s, when it became part of a “form of professional identity construction” (144); See also James Sorenson, “Genetic Counseling: Values That Have Mattered,” for a discussion of the different values that structured the field as it transitioned from eugenics, to medical genetics, to genetic counseling performed by masters-trained professionals.
8 See Resta (1997) “Eugenics and Nondirectiveness in Genetic Counseling,” p. 256. J. Gabriel
Even if dissimilar to the state-sanctioned eugenics of the past, which entailed forced sterilization and marriage laws, the omnipresent pressure on American women to produce the ‘best’ or healthiest children possible using available genetic and reproductive technologies resonates with the quest for superior biological fitness and could be considered neo-eugenic (2012: 12).
Even though non-directiveness cannot be, historically speaking, a response to the contemporary disability critique of prenatal getting testing, it can be useful to think of it this way. Disability scholars and activists tend to structure their critiques of prenatal testing in terms that suggest that the field of genetic counseling has not yet attained its ideal of non-directiveness. This critique ranges from pointing out specific lapses to raising more abstract or systemic concerns. First, there are the straightforward and easy to address lapses of the profession’s own moral code (for instance, if someone were to actively urge a woman to consider termination). More abstract or systematic concerns can be difficult or impossible to address: For instance, if “the process of prenatal counseling itself presupposes an implicit bias to abort any fetus deemed ‘defective’” (Patterson and Satz 2002: 119), it is hard to see what can be done besides abolishing prenatal genetic testing, which is clearly not on the table. Problems related to prenatal testing can be remedied only if there is something specific about the process, other than its existence, that can be altered.
The following is an example of an argument about the existence or nature of genetic testing. Jennings argues that the ground and discourse of the profession is shaped by technology, so the “counseling may be neutral as regards the personal beliefs of the counselor, but it cannot be neutral as regards the very context of genetic technology itself” (2000: 136). Like Patterson and Satz’s argument, Jennings’ argument highlights the existence of technology as a system of power that structures reality and thus implicitly directs the conversation between counselor and client: “Prenatal genetic testing technology shapes choice by in effect making everything into a choice,” Jennings writes (2000: 135). Prior to what Abby Lippman has referred to as the “geneticization” of pregnancy, pregnancy could proceed without requiring a decision at every turn; women did not find themselves in the office of a genetic counselor, unclear about why, only to learn that because they are older than 35-years-old, they have the option of learning about conditions, which raise the option, if diagnosed, of raising the option of considering a termination.
Balanced Information and Unconscious Negative Bias
There are also critiques in-between the two extremes above, and it is these to which the genetic counseling community has responded. These related critiques, which I will refer to as the unconscious negative bias critique and the balanced information critique, proceed roughly as follows:
(a) Unconscious negative bias critique: Counselors unconsciously replicate the negative biases of society toward people with disabilities because they have had few interactions with people with disabilities and therefore lack the ability to imagine how good life can be with disability (Parens and Asch 2003).
(b) Balanced information critique: Counselors offer a biased picture of life with a disability because they discuss negatives such as medical risk but exclude positives such as unique abilities and quality of life (Stern 2012).
With respect to the second critique, the balanced information critique, changes began in the 1960s and 1970s. In the 1970s, groups mobilized to reject negative labels such as mongoloid, retarded, handicapped, dumb, etc. (Stern 2012). The work continues today. In 2006, Brian Skotko, medical geneticist and advocate for people with Down syndrome, wrote a Letter to the Editor to the American Journal of Obstetrics and Gynecology to point out that a study published in the journal used words such as “handicap,” “risk,” and “normal,” rather than non-directive options, such as “disability,” “chance,” and “without disabilities.” “In previous studies,” he writes, “mothers of children with Down syndrome asked their health care providers to use sensitive language during counseling. We must all be reminded that our words make a difference” (2006: 625–626).
The movement to include positive information has, for better or worse, recently culminated in state legislation, such as Pennsylvania’s Down Syndrome Prenatal and Postnatal Information Act, also known as Chloe’s Law. This legislation, named after a little girl with Down syndrome, mandates that positive information be included in counseling sessions about Down syndrome and requires the Department of Health to make available “up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations” (Pub. L. 2450, No. 130, Cl. 35, 2014). In addition to information about the medical facts, parents are to be given resources for support such as phone numbers for national and local Down syndrome organizations.
Setting aside the question of whether laws are the best way to encourage the provision of positive information, the general shift towards balanced information is considered by many to be an improvement. Previously, studies (Skotko 2006; Skotko 2009) have shown that mothers who chose to continue pregnancies after a diagnosis of Down syndrome were not happy with quality of the information given during diagnosis. Skotko found that physicians9 delivering prenatal diagnoses did not claim by self-report to offer unbiased information: 13% said that they “‘emphasize’ the negative aspects of DS [Down syndrome] so that parents would favor a termination [and] 10% actively ‘urge’ parents to terminate” (Skotko 2006: 2362). This is clearly an area where providers could improve.
Dixon (2008) argues that medical professionals do not give sufficient information to women following a prenatal diagnosis of Down syndrome for their decisions to be considered truly informed. He refers to the “failure of non-directive pre-abortion counseling” and suggests a link between this failure, as well as biased information during screening and testing, and the “very high abortion rate for fetuses
9 It should be noted that these studies include physicians, not genetic counselors, and non-directiveness is not generally considered a cornerstone of physician practice. Some studies show that women were less likely to terminate if they received information about aneuploidy from a geneticist or genetic counselor rather than an obstetrician. See Munger et al. 2007
J. Gabriel
diagnosed with Down syndrome” (2008: 3). Thus the concept of non-directiveness is flipped on its head. Whereas in the past “non-directiveness” meant listing medical facts and letting the client decide, today, only including medical facts is considered directive (because medical facts are not neutral but negatively biased). Some argue that the positive information movement threatens the ideal of non-directiveness (Caplan 2015), but regardless, it is clear that the movement has had real impact on the way genetic counseling is approached.
In addition to improving the quality and balance of information, the genetic counseling community has worked to increase student and counselor interaction with families raising children with disabilities in order to decrease the unconscious negative bias of genetic counselors. Writing in 2007 about her own experiences counseling clients about Down syndrome, Brasington, a genetic counselor, describes her transition from thinking in terms of the medical model to thinking in terms of the social model of disability. Her transformation was in large part due to interacting with families parenting children with Down syndrome. The expectation that this type of experience might transform genetic counselor attitudes, and accordingly counseling methods, is what informed the curriculum design of the genetic counseling program established by Judith Tsipis in 1992 at Brandeis University. Other programs have followed suit, with some programs including disability studies in their curricula and many offering structured opportunities for students to interact with individuals with disabilities in a non-clinical setting (Madeo et al. 2011; Saxton 2000; Sanborn and Patterson 2014).
Further responses to the unconscious bias critique have included professional workshops and meetings that encourage communication between the disability community and the genetic counseling profession. What has come out of these conversations is an intention to increase education about disabilities and “exposure of healthcare providers to individuals with disabilities … to foster awareness” (Madeo et al. 2011: 1782). To facilitate interactions that improve communication between the two communities, the American Board of Genetic Counselors offers continuing education credit for counselors who participate in specific volunteer activities (Madeo et al. 2011).
Decreasing Unconscious Bias in Order to Enhance Reproductive Freedom
The changes discussed above are said to be done in the service of altering the bias of genetic counselors so that they will provide genuinely non-directive counseling that allows clients to make informed choices. This justification is regularly given even when there are numerous other important reasons for the changes. For instance, Asch (2003) devotes the introduction of her “Disability Equality and Prenatal Testing: Contradictory or Compatible?” to a discussion of how prenatal testing followed by selective abortion affects “social institutions beyond the family,” Zooming Out:
“express[es] views that worsen the situation for people who live with disabilities now and in the future,” and is at odds with “reforming such institutions as schools [and] workplaces” (2003: 316–317). But she then concludes her introduction by stating her intention in the article as follows: “My concern is to facilitate true reproductive choice for women by urging changes in the way prenatal testing occurs and the rhetoric that surrounds it” (2003: 17).
Changing attitudes and language very well may enhance reproductive choice. But Asch’s vacillation between the social and the private may reveal the poverty of a framework that justifies only in terms of freedom of choice. To claim that the goal is primarily to facilitate the reproductive choices of women and couples seems a myopic explanation given some of more systemic concerns raised in the literature, including by Asch herself. Attention to some of the specific issues raised by disability activists and scholars suggests that more reproductive freedom is not precisely what is sought. Notice how Asch’s writing displays an ambivalence between the social and the private:
Despite the symbolic and tangible changes attributable to laws like the Americans with Disabilities Act, the nation’s disabled population is still less educated, less employed, less involved in civic life, less represented in the political process, and less influential on the design of products than their numbers warrant (Asch 2003: 331).
And then, ten pages later, the reversion to information and reproductive choice:
Yet I persist in believing that as part of the goal of creating such a welcoming society, we must persuade professionals to change what they tell prospective parents about life with disability; convince those parents to learn about how children and adults in today’s world survive and thrive; and then endorse the choices people make about their reproductive and family lives (Asch 2003: 341, my italics).
She is willing to “endorse the choices of parents,” but only after they have been convinced of the value of life with disability. When she writes of the “the goal of creating such a welcoming society,” I believe she reveals that while reproductive freedom may be valuable, both in itself and as a means, it is not the end. Framing the issue primarily in terms of enhancing autonomy may be too narrow to capture what is needed.
Zooming Out: Solidarity as Shaping Sensibility
A core feature of a prenatal genetic counseling session is to emphasize the personal nature of decisions related to prenatal genetic testing. When clients ask a counselor which tests she would have or what she would do if she had an abnormal result, the counselor’s response tends to center around reminding the client how personal the decision is and how much these decisions vary from woman to woman. These decisions certainly are personal, but, as anthropologist Rayna Rapp notes, “private choices always have pubic consequences” (1988). Similarly, Patterson and Satz
J. Gabriel
raise the question of how genetic counselors should respond to the claim that “the very enterprise of genetic counseling is political” (2003: 120). Further, Jennings reminds us of the “enormous political apparatus of scientific research and testing facilities, to say nothing of the enormous public (whether governmental or corporate) investment and expense that genetic testing technology represents” (2000: 131); and Saxton points out that “[a] woman’s individual decision, when resulting from social pressure, or colluding with ‘a trend,’ has repercussions for all others in the society” (2002: 157).
While I would not go as far as Jennings in concluding that “[i]t is breathtakingly implausible … to characterize the use of genetic testing in obstetric practice in our society as a ‘private’ act in any sense” (2000: 131), I do think that the focus on enhancing reproductive choice frames the discussion in terms of the private realm. Reproductive decisions certainly are a private matter, but genetic testing, broadly speaking, has social dimensions as well. In this section, I explore how the concept of solidarity might contribute to what Jennings and Dawson refer to as the calculus of consent, or, in this context, the reasons for responding to the call of the disability community. I conclude by considering the contribution of the concept of solidarity for imagining future responses to the disability critique of prenatal testing. I begin with some clarification of the terms calculus of consent, moral imagination, and solidarity.
Jennings and Dawson use the term “calculus of consent” to encompass justifications for obeying laws, rules, and norms that benefit others as well as “stories that a society tells about itself and that individuals tell about their place in it” (Jennings and Dawson 2015: 31). As adapted to my topic, the calculus of consent will refer to justifications of the guidelines and suggestions discussed above, such as “to enhance reproductive freedom” or “to achieve genuine non-directiveness.” By moral imagination, Jennings and Dawson mean “the capacity to take a critical distance from the given, to think reality otherwise” (Jennings and Dawson 2015: 31). In the same way, I use moral imagination in the context of this paper to refer to taking a step back from the controversy and contemplating new possibilities for the future. Taken together, I use the concepts of moral imagination and calculus of consent to reflect on the past and imagine the future.
I use the concept of solidarity to refer to a pre-reflective bond between individuals and between grouped individuals that moves us to act on one another’s behalf “just because.” Or, put more philosophically, it is the condition for the possibility of recognizing one another as ends, but not as abstract ends: As embodied, vulnerable, mutually-dependent beings who stand in a dialectical relation of “needful freedom” with the world (Jonas 2001; Kittay 2011). In other words, our individuality and freedom are premised upon dependence. We cannot go out into the world and pursue our diverse projects as individuals without first attending to the material needs of our bodies. The response to an other, in the recognition of this shared dependence, is rooted in a feeling of solidarity.
J. Gabriel
The Calculus of Consent and the Response to the Disability Critique:
Enhancing Autonomy?
Jennings and Dawson suggest that one of the crucial contributions of the concept of solidarity to bioethical discourse is to add a relational dimension to other ethical principles. Without the concept of solidarity, they say, the interests of individuals are viewed as separate and distinct, constituted prior to relationship, not in and through relationship with others. The picture is one of isolated atomic individuals whose interests are sometimes at odds with one another and sometimes compatible, but only incidentally or instrumentally so: “a vision of the individual agent unencumbered, as it were, by solidarity is a vision that stresses the uniqueness of each person and emphasizes difference and separation rather than sameness and commonality. Instrumental ties are the limit of relationally” (2015: 33).
Viewed within an individualistic framework, what is the justification for the genetic counseling profession to work with the disability community? Perhaps it does so out of a kind of “enlightened self-interest”: The profession may improve its public image when it demonstrates attention to the accusation of negative bias towards individuals with disabilities. It also improves its “self-image” by proving it can live up to its own ideal of non-directiveness and serve its clients in the way it claims to: Providing information so that clients can make autonomous decisions. This explanation does not seem to capture the reasons why the genetic counseling profession has worked with the disability community or why it should continue to do so.
In a society without solidarity, Jennings and Dawson write, “individuals must obey common rules … not for the sake of others or their rights or interests—those things are incidental—but for the sake of their own protection … There is no encumbrance here, no normative push of commitment or obligation, no motivational pull of mutual recognition and resemblance” (2015: 33). To apply this thinking to the genetic counseling profession’s response to the disability community is not to say that genetic counselors are bad people or that they do not want to show respect for individuals with disabilities; I think they do, and this is precisely why framing the “why” of responding to the critiques of above in terms reproductive freedom does a disservice to both communities.
When one considers what the disability community gains from working with the genetic counseling profession, the limits of an individualistic framework, i.e. the reproductive freedom framework, become clearer. As discussed above, some in the disability community say that their aim is to improve reproductive freedom. Arthur Caplan wonders if this is whole motivation of some of the recent positive information laws: “They see the legislation as pro-information and, thus, pro-client autonomy, although, if abortion rates did not change in states with such laws, it is fairly certain the legislation would be seen by many pro-life and disability proponents as a failure” (2015: 3). If this is true, then providing balanced information to enhance the reproductive freedom of women is a means to an end: To decrease abortion rates of individuals with disabilities, or at least to create a welcoming society where individuals with disabilities are respected and able to participate in society to the fullest
extent possible. The goal, then, is not merely or even primarily “choice,” but, to use the language of Jennings and Dawson, “right recognition” and “right relationship.” And the genetic counseling community responds or should respond to this call for recognition out of an obligation, because of the “motivational pull of mutual recognition and resemblance,” not simply to enhance the autonomy of clients or improve its perception among the public and in the disability community.
Again, this is not dismiss the importance of reproductive autonomy, but to zoom out and consider the conditions that make individual freedom possible. Jennings and Dawson describe how solidarity grounds the structural context of freedom:
The normativity of social political life is grounded on what might be called ‘right recognition’ and ‘right relationship.’ We define solidarity as a moral practice that is fundamental to a social and cultural structure of right relationship. Right recognition is a condition of moral and political membership, rights, and equality—the recognition of the moral standing and respect of each person. Right relationship is a condition of mutuality—the mutuality of interdependence, care, and concern for others and their relational human flourishing (2015: 32).
Applying these ideas, we would justify the actions of the genetic counseling profession not by saying it is good for the profession or even that it is good for the reproductive freedom of clients; instead, we would look to the background and context of a right like reproductive freedom and say it is good to recognize the moral standing of people with disabilities because, well, they have moral standing and deserve recognition, just as we all do. While people can and have offered instrumental reasons for giving rights to people who lack them (black people, women, LGBTQ individuals, and so on), ultimately, the reason to, for instance, grant black people or women the right to vote, is not that it benefits the country but that they are persons who deserve recognition and the rights that follow from this recognition. Likewise, we stop using offensive language to describe black people, women, gay people, trans people, people with three chromosomes, etc. not to enhance freedom, although this may occur incidentally, but to respect the humanity of the other.
The argument applies as well to the justification for increasing the “exposure” of genetic counseling students and practicing genetic counselors to individuals with disabilities. Why should genetic counseling students interact with people with disabilities? Why should genetic counselors advocate for people with disabilities or otherwise interact with them in non-clinical settings? The argument is that this “exposure” decreases unconscious bias against people with disabilities by enlarging the imagination of counselors to include living well with a disability. This in turn makes non-directive counseling possible because the counselor has supposedly freed herself from bias. So in this view, the justification for meeting people with disabilities is to enhance the autonomy of pregnant women via non-directive counseling. Some or all of this may be true, but I would argue that the broader reason for interacting with people is less instrumental: It is not “so that” or “in order to,” but because this recognition is owed and is long overdue. The demand to recognize the other as fully human is rooted in a relationship that already existed but was un- or under-acknowledged. Recognition is not about interests, desires, or results; it can be inconvenient and uncomfortable to give up a position of power that was premised upon others not being recognized, as is clear from the history of other groups that Zooming Out: Solidarity
Another random document with no related content on Scribd:
1.C. The Project Gutenberg Literary Archive Foundation (“the Foundation” or PGLAF), owns a compilation copyright in the collection of Project Gutenberg™ electronic works. Nearly all the individual works in the collection are in the public domain in the United States. If an individual work is unprotected by copyright law in the United States and you are located in the United States, we do not claim a right to prevent you from copying, distributing, performing, displaying or creating derivative works based on the work as long as all references to Project Gutenberg are removed. Of course, we hope that you will support the Project Gutenberg™ mission of promoting free access to electronic works by freely sharing Project Gutenberg™ works in compliance with the terms of this agreement for keeping the Project Gutenberg™ name associated with the work. You can easily comply with the terms of this agreement by keeping this work in the same format with its attached full Project Gutenberg™ License when you share it without charge with others.
1.D. The copyright laws of the place where you are located also govern what you can do with this work. Copyright laws in most countries are in a constant state of change. If you are outside the United States, check the laws of your country in addition to the terms of this agreement before downloading, copying, displaying, performing, distributing or creating derivative works based on this work or any other Project Gutenberg™ work. The Foundation makes no representations concerning the copyright status of any work in any country other than the United States.
1.E. Unless you have removed all references to Project Gutenberg:
1.E.1. The following sentence, with active links to, or other immediate access to, the full Project Gutenberg™ License must appear prominently whenever any copy of a Project Gutenberg™ work (any work on which the phrase “Project Gutenberg” appears, or with which the phrase “Project Gutenberg” is associated) is accessed, displayed, performed, viewed, copied or distributed:
This eBook is for the use of anyone anywhere in the United States and most other parts of the world at no cost and with almost no restrictions whatsoever. You may copy it, give it away or re-use it under the terms of the Project Gutenberg License included with this eBook or online at www.gutenberg.org. If you are not located in the United States, you will have to check the laws of the country where you are located before using this eBook.
1.E.2. If an individual Project Gutenberg™ electronic work is derived from texts not protected by U.S. copyright law (does not contain a notice indicating that it is posted with permission of the copyright holder), the work can be copied and distributed to anyone in the United States without paying any fees or charges. If you are redistributing or providing access to a work with the phrase “Project Gutenberg” associated with or appearing on the work, you must comply either with the requirements of paragraphs 1.E.1 through 1.E.7 or obtain permission for the use of the work and the Project Gutenberg™ trademark as set forth in paragraphs 1.E.8 or 1.E.9.
1.E.3. If an individual Project Gutenberg™ electronic work is posted with the permission of the copyright holder, your use and distribution must comply with both paragraphs 1.E.1 through 1.E.7 and any additional terms imposed by the copyright holder. Additional terms will be linked to the Project Gutenberg™ License for all works posted with the permission of the copyright holder found at the beginning of this work.
1.E.4. Do not unlink or detach or remove the full Project Gutenberg™ License terms from this work, or any files containing a part of this work or any other work associated with Project Gutenberg™.
1.E.5. Do not copy, display, perform, distribute or redistribute this electronic work, or any part of this electronic work, without prominently displaying the sentence set forth in paragraph 1.E.1 with active links or immediate access to the full terms of the Project Gutenberg™ License.
1.E.6. You may convert to and distribute this work in any binary, compressed, marked up, nonproprietary or proprietary form, including any word processing or hypertext form. However, if you provide access to or distribute copies of a Project Gutenberg™ work in a format other than “Plain Vanilla ASCII” or other format used in the official version posted on the official Project Gutenberg™ website (www.gutenberg.org), you must, at no additional cost, fee or expense to the user, provide a copy, a means of exporting a copy, or a means of obtaining a copy upon request, of the work in its original “Plain Vanilla ASCII” or other form. Any alternate format must include the full Project Gutenberg™ License as specified in paragraph 1.E.1.
1.E.7. Do not charge a fee for access to, viewing, displaying, performing, copying or distributing any Project Gutenberg™ works unless you comply with paragraph 1.E.8 or 1.E.9.
1.E.8. You may charge a reasonable fee for copies of or providing access to or distributing Project Gutenberg™ electronic works provided that:
• You pay a royalty fee of 20% of the gross profits you derive from the use of Project Gutenberg™ works calculated using the method you already use to calculate your applicable taxes. The fee is owed to the owner of the Project Gutenberg™ trademark, but he has agreed to donate royalties under this paragraph to the Project Gutenberg Literary Archive Foundation. Royalty payments must be paid within 60 days following each date on which you prepare (or are legally required to prepare) your periodic tax returns. Royalty payments should be clearly marked as such and sent to the Project Gutenberg Literary Archive Foundation at the address specified in Section 4, “Information about donations to the Project Gutenberg Literary Archive Foundation.”
• You provide a full refund of any money paid by a user who notifies you in writing (or by e-mail) within 30 days of receipt that s/he does not agree to the terms of the full Project Gutenberg™ License. You must require such a user to return or destroy all
copies of the works possessed in a physical medium and discontinue all use of and all access to other copies of Project Gutenberg™ works.
• You provide, in accordance with paragraph 1.F.3, a full refund of any money paid for a work or a replacement copy, if a defect in the electronic work is discovered and reported to you within 90 days of receipt of the work.
• You comply with all other terms of this agreement for free distribution of Project Gutenberg™ works.
1.E.9. If you wish to charge a fee or distribute a Project Gutenberg™ electronic work or group of works on different terms than are set forth in this agreement, you must obtain permission in writing from the Project Gutenberg Literary Archive Foundation, the manager of the Project Gutenberg™ trademark. Contact the Foundation as set forth in Section 3 below.
1.F.
1.F.1. Project Gutenberg volunteers and employees expend considerable effort to identify, do copyright research on, transcribe and proofread works not protected by U.S. copyright law in creating the Project Gutenberg™ collection. Despite these efforts, Project Gutenberg™ electronic works, and the medium on which they may be stored, may contain “Defects,” such as, but not limited to, incomplete, inaccurate or corrupt data, transcription errors, a copyright or other intellectual property infringement, a defective or damaged disk or other medium, a computer virus, or computer codes that damage or cannot be read by your equipment.
1.F.2. LIMITED WARRANTY, DISCLAIMER OF DAMAGES - Except for the “Right of Replacement or Refund” described in paragraph 1.F.3, the Project Gutenberg Literary Archive Foundation, the owner of the Project Gutenberg™ trademark, and any other party distributing a Project Gutenberg™ electronic work under this agreement, disclaim all liability to you for damages, costs and
expenses, including legal fees. YOU AGREE THAT YOU HAVE NO REMEDIES FOR NEGLIGENCE, STRICT LIABILITY, BREACH OF WARRANTY OR BREACH OF CONTRACT EXCEPT THOSE PROVIDED IN PARAGRAPH 1.F.3. YOU AGREE THAT THE FOUNDATION, THE TRADEMARK OWNER, AND ANY DISTRIBUTOR UNDER THIS AGREEMENT WILL NOT BE LIABLE TO YOU FOR ACTUAL, DIRECT, INDIRECT, CONSEQUENTIAL, PUNITIVE OR INCIDENTAL DAMAGES EVEN IF YOU GIVE NOTICE OF THE POSSIBILITY OF SUCH DAMAGE.
1.F.3. LIMITED RIGHT OF REPLACEMENT OR REFUND - If you discover a defect in this electronic work within 90 days of receiving it, you can receive a refund of the money (if any) you paid for it by sending a written explanation to the person you received the work from. If you received the work on a physical medium, you must return the medium with your written explanation. The person or entity that provided you with the defective work may elect to provide a replacement copy in lieu of a refund. If you received the work electronically, the person or entity providing it to you may choose to give you a second opportunity to receive the work electronically in lieu of a refund. If the second copy is also defective, you may demand a refund in writing without further opportunities to fix the problem.
1.F.4. Except for the limited right of replacement or refund set forth in paragraph 1.F.3, this work is provided to you ‘AS-IS’, WITH NO OTHER WARRANTIES OF ANY KIND, EXPRESS OR IMPLIED, INCLUDING BUT NOT LIMITED TO WARRANTIES OF MERCHANTABILITY OR FITNESS FOR ANY PURPOSE.
1.F.5. Some states do not allow disclaimers of certain implied warranties or the exclusion or limitation of certain types of damages. If any disclaimer or limitation set forth in this agreement violates the law of the state applicable to this agreement, the agreement shall be interpreted to make the maximum disclaimer or limitation permitted by the applicable state law. The invalidity or unenforceability of any provision of this agreement shall not void the remaining provisions.
1.F.6. INDEMNITY - You agree to indemnify and hold the Foundation, the trademark owner, any agent or employee of the Foundation, anyone providing copies of Project Gutenberg™ electronic works in accordance with this agreement, and any volunteers associated with the production, promotion and distribution of Project Gutenberg™ electronic works, harmless from all liability, costs and expenses, including legal fees, that arise directly or indirectly from any of the following which you do or cause to occur: (a) distribution of this or any Project Gutenberg™ work, (b) alteration, modification, or additions or deletions to any Project Gutenberg™ work, and (c) any Defect you cause.
Section 2. Information about the Mission of Project Gutenberg™
Project Gutenberg™ is synonymous with the free distribution of electronic works in formats readable by the widest variety of computers including obsolete, old, middle-aged and new computers. It exists because of the efforts of hundreds of volunteers and donations from people in all walks of life.
Volunteers and financial support to provide volunteers with the assistance they need are critical to reaching Project Gutenberg™’s goals and ensuring that the Project Gutenberg™ collection will remain freely available for generations to come. In 2001, the Project Gutenberg Literary Archive Foundation was created to provide a secure and permanent future for Project Gutenberg™ and future generations. To learn more about the Project Gutenberg Literary Archive Foundation and how your efforts and donations can help, see Sections 3 and 4 and the Foundation information page at www.gutenberg.org.
Section 3. Information about the Project Gutenberg Literary Archive Foundation
The Project Gutenberg Literary Archive Foundation is a non-profit 501(c)(3) educational corporation organized under the laws of the state of Mississippi and granted tax exempt status by the Internal Revenue Service. The Foundation’s EIN or federal tax identification number is 64-6221541. Contributions to the Project Gutenberg Literary Archive Foundation are tax deductible to the full extent permitted by U.S. federal laws and your state’s laws.
The Foundation’s business office is located at 809 North 1500 West, Salt Lake City, UT 84116, (801) 596-1887. Email contact links and up to date contact information can be found at the Foundation’s website and official page at www.gutenberg.org/contact
Section 4. Information about Donations to the Project Gutenberg Literary Archive Foundation
Project Gutenberg™ depends upon and cannot survive without widespread public support and donations to carry out its mission of increasing the number of public domain and licensed works that can be freely distributed in machine-readable form accessible by the widest array of equipment including outdated equipment. Many small donations ($1 to $5,000) are particularly important to maintaining tax exempt status with the IRS.
The Foundation is committed to complying with the laws regulating charities and charitable donations in all 50 states of the United States. Compliance requirements are not uniform and it takes a considerable effort, much paperwork and many fees to meet and keep up with these requirements. We do not solicit donations in locations where we have not received written confirmation of compliance. To SEND DONATIONS or determine the status of compliance for any particular state visit www.gutenberg.org/donate.
While we cannot and do not solicit contributions from states where we have not met the solicitation requirements, we know of no
prohibition against accepting unsolicited donations from donors in such states who approach us with offers to donate.
International donations are gratefully accepted, but we cannot make any statements concerning tax treatment of donations received from outside the United States. U.S. laws alone swamp our small staff.
Please check the Project Gutenberg web pages for current donation methods and addresses. Donations are accepted in a number of other ways including checks, online payments and credit card donations. To donate, please visit: www.gutenberg.org/donate.
Section 5. General Information About Project Gutenberg™ electronic works
Professor Michael S. Hart was the originator of the Project Gutenberg™ concept of a library of electronic works that could be freely shared with anyone. For forty years, he produced and distributed Project Gutenberg™ eBooks with only a loose network of volunteer support.
Project Gutenberg™ eBooks are often created from several printed editions, all of which are confirmed as not protected by copyright in the U.S. unless a copyright notice is included. Thus, we do not necessarily keep eBooks in compliance with any particular paper edition.
Most people start at our website which has the main PG search facility: www.gutenberg.org.
This website includes information about Project Gutenberg™, including how to make donations to the Project Gutenberg Literary Archive Foundation, how to help produce our new eBooks, and how to subscribe to our email newsletter to hear about new eBooks.
